Hope for Caregivers

I think one of the hardest aspects of Alzheimer’s is facing just how long, exhausting, lonely and tiring the journey is. Alzheimer’s is a black cloud that is all encompassing. It affects not only those diagnosed, but impacts the entire family that struggles with the emotional, physical and financial burden associated with the disease. It has taken a toll on our family in so many ways.

I was a caregiver for my husband, Alan, for 17 years. I helped Alan in all aspects of daily living, kept him safe from wandering, and made difficult decisions during each new crisis, always trying to anticipate what would come next.

The burden of daily care and decision-making falls increasingly on the caregiver, resulting in burnout and undue stress. I tried to avoid the stress by remaining flexible, planning ahead and attempting to anticipate what transition would come next. However, even though I could be mentally prepared for change and knew it was coming, I was never emotionally prepared when it happened. After a crisis occurred, I would cry, mourn each loss and then try to figure out what changes I needed to make for the next “new normal,” where “normal” meant living with uncertainty and constantly adapting.

I didn’t realize the toll caregiving was taking on my physical and mental health until my doctor informed me that my friends and family were worried about me. This was the wake-up call I needed. I then realized the importance of reaching out and requesting support and help from family, friends and a paid companion.

The most helpful advice came from joining a support group where I learned about communicating and connecting. First, I had to understand where Alan was coming from and not correct or argue with him. When he was scared I needed to step into his shoes and validate his fears and anxieties in order to remain connected. I also learned to focus on what Alan could do instead of what he couldn’t. And I never tested him by asking, “Who am I?” I found it easier to enjoy each day with renewed hope by finding the pleasure in the little things, and moments of presence, love, and connection. I would live for the moments when Alan would say my name or give me a warm and loving smile.

I tried to keep Alan as involved in our lives as possible until we hit roadblocks. When it came to making decisions on whether to include Alan, I had trouble with the concept of who was I doing it for – Alan or me? Would he have success or would it be too much for him? And what penalty was I willing to pay for the reward of being together?

The most difficult decision I made was moving Alan into a care home. I found my role as his caregiver didn’t abruptly end – it just changed. Transitions were more difficult for me to accept and caught me off guard. It became increasingly difficult to watch Alan’s decline and deal with the ambiguous loss of the reality that he was both here and gone at the same time. As a caregiver, I went through waves of being okay and not as okay, and I never knew when the waves would hit or for how long.

So how can we as a Jewish community help families struggling with Alzheimer’s disease? By attending the “Keeping the Spirit Alive” Alzheimer’s Caregiver Conference on Sunday, April 30, at Adath Jeshurun Congregation. It will be meaningful, informative and possibly life-changing for all those trying to cope with one of the toughest jobs – caregiving.